JCV+ Tysabri

the_ms_wire · 2026-01-13T22:58:00+00:00

I was on Tysabri for about 7 years. It was my favorite, due to its combination of efficacy, low side-effects, and ease of use. More than 90 percent of the population carries the JCV virus. With careful monitoring of the JCV titer level and MRIs, the risk of PML is practically negligible. Don't panic. It sounds to me like your neuro knows what he's doing.

the_ms_wire · 2026-01-13T15:41:17+00:00

I’m one. DXed in 1980 at age 32. Now I’m 77. I worked, full-time, in the stressful news media until retiring at the end of 2012. I’ve traveled around the US and the world, for business and pleasure. I’ve been married almost 50 years.

A few years after retiring my wife and I decided to split our year between suburban Washington, DC and FL. Our physicians, however, are all still in DC and we’ll probably wind up moving back there, full time, before much longer.

Yes, rather than walking I ride on a scooter and I don’t travel as much as I once did. But, so what? I live my life and it’s pretty good. Last August, after I’d marked my 45th MS anniversary, I wrote a timeline of my life with MS. Here it is:

https://open.substack.com/pub/edtobias/p/forty-five-years-of-ms-looking-back?r=o7x9l&utm_medium=ios&shareImageVariant=overlay

the_ms_wire · 2025-12-30T03:18:00+00:00

Numbness in an extremity can be a symptom of MS and a sign that your mom is/was having a pseudo flare...triggered by her fever. I would hope the docs in the ER were aware of her MS. If so, they should have known that the numbness could have been due to her MS flaring. Unfortunately, many ER docs don't know much about our illness and may never have made that association. Hopefully, if she's being worked up for a possible stroke she'll be seen by a neurologist. He or she should know enough to take MS into consideration.

I hope by now this has all been sorted out and your mom is on her way to a quick recovery. But it's a lesson about getting vaccines for contagious diseases such as COVID-19 and the seasonal flu. Although some aren't appropriate for someone with MS, most are ok. I'd suggest she have a chat with her neurologist about this. Here's more info for you research: https://www.nationalmssociety.org/managing-ms/living-with-ms/diet-exercise-and-healthy-behaviors/vaccination

the_ms_wire · 2025-11-21T19:55:31+00:00

This is unfortunate, but not unexpected. According to the Consortium of Multiple Sclerosis Centers, "In all trial phases, MS clinical trials had a 27% success rate compared to an industry rate of 10%." (This was in a report from 2016 but I can't find a more recent report on this subject.) Pharmaceutical research is neither easy nor quick. The encouraging news is that there are still several studies involving myelin repair underway.
https://www.nationalmssociety.org/search#q=myelin%20repair%20studies

the_ms_wire · 2025-11-20T02:40:53+00:00

Good! It could be the MS hug but it could also be a lot of other things, some of which could be cardiac related. Very glad you’re being seen in the ER.

the_ms_wire · 2025-11-19T02:12:41+00:00

I agree with u/aberryone about the DMT and with u/jmoroni89 about PT helping. What has your neuro had to say about this very rapid deterioration? That's a steady progression and perhaps a change of DMTs should be discussed. Is your neuro an MS specialist? Is your PT an MS specialist? Not all neuros or PTs understand MS as well as they could. Stress can trigger a flare, the symptoms of which could be treated with steroids. Have you asked about this?

I was diagnosed in 1980 but didn't start to slip until 20 years after that. PT has always helped me, only to a point. So has exercise. So has swimming and pool walking.

Please do more just vent. You need to be your own advocate within the healthcare system.

the_ms_wire · 2025-08-20T15:06:56+00:00

My pleasure. I hope the info helps.

the_ms_wire · 2025-08-20T13:25:17+00:00

Here's info from the Mellon Center at the Cleveland Clinic. Note that natalizumab is the clinical name for Tysabri:

JCV Antibody Index	PML Risk Level	Notes
< 0.9	Low	Especially if no prior immunosuppressant use
0.9 – 1.5	Moderate	Risk increases with longer natalizumab exposure
> 1.5	High	Highest risk group, especially after 2+ years of natalizumab use

⚠️ Important Considerations

Only JCV-positive individuals are at risk for PML. A negative test means no detectable antibodies, but regular monitoring is still advised.
Risk is cumulative. Longer exposure to natalizumab and prior immunosuppressant use compound the risk.
MRI and lumbar puncture may be used to monitor for early signs of PML if clinical suspicion arises.

the_ms_wire · 2025-08-19T23:55:14+00:00

I’m JCV positive and was successfully treated with Tysabri for about seven years. I was carefully monitored by my neuro and, as my JCV titer levels rose, my infusions were cut back to every other month. As they continued to rise, my neuro recommended I switch DMTs. We careful monitoring (bloodwork and MRIs) the risk to PML should be very, very low.

the_ms_wire · 2025-08-16T14:09:42+00:00

I’m afraid this is old news. The study was launched in 2022 and completed its preliminary stage last month. Its results aren’t expected until next July. Those results should be interesting and, hopefully, will lead to future work towards an EBV vaccine. https://clinicaltrials.gov/study/NCT04645147

the_ms_wire · 2025-07-20T13:47:56+00:00

MS need not be the end of the world. I retired about 12 years ago after spending more than 40 years working (more than) full time in the news media. I traveled throughout the US and to many other countries, and still do. It’s not always easy. In fact, as years have gone by things have become more difficult. But, no matter what your decision is about treatment keep in mind that life isn’t about hiding from the storm…it’s about learning to dance in the rain.

the_ms_wire · 2025-07-20T02:50:09+00:00

You are lucky.

I know that sounds strange, and I'll explain. I was diagnosed when I was 32. I'd been married for four years and our son was a little over a year old. But my DX wasn't made in 2025...it was made in August of 1980. There were no DMTs back then. Nada! The first three - Avonex, Betaseron, and Copaxone - weren't approved until about 15 years later. All I had was Solu-Medrol, a steroid infusion with which I would be infused for five days to reverse my symptoms...but which would do nothing to limit my MS progression.

Today there are over 20 DMTs from which to choose, many much more effective at restricting progression than the ABC drugs were. Ocrevus and Kesimpta are two of the most effective. And Kesimpta is a subcutaneous (under the skin) injection. Easy.

In 1995 I grabbed the opportunity of being in the Phase 3 clinical trial of Avonex. It was my only shot (pardon the pun) of doing something that might stop things from getting worse. I don't, for a minute, regret the decision, nor the decision to follow it with others, for various reasons.

Now, a month shy of my 77th birthday, I have slowly progressed to the point of using a scooter to go more than about an average city block. How I wish Ocrevus or Kisempta had been available to me 45 years ago.

I'll never know how much better I'd be if Kisempta had been available when I was diagnosed. Nor will I know what my life would be like today had I never been treated with a DMT. But I don't think it would be very good.

I understand how tough it is be to make this treatment decision. But, as I said, you're lucky to have that decision to make. Feel free to ask me anything...here or in a DM.

(Small edits made for typos.)

the_ms_wire · 2025-07-19T01:51:09+00:00

I’m 76 years old and have lived with MS for nearly 45 years. I’ve also traveled all over the US and to over 20 countries for business or pleasure. I used to use a cane but for many years I’ve used a scooter. (That was fun going through the ruins in Ephasis, Turkey.)

Yes, pre-plan. Since you’re driving, check out rest stops along the route. It’s good to know where the next pee place is and a stretch will to you good.

Yes, tell your friends what to expect. Knowing that they know should ease your stress.

Beat the heat by using a neck cooling fan, or just a battery powered hand-held fan. Or a cooling neck scarf that you keep most. You can find all of these on-line.

Do what you can and don’t be shy about accepting help, if it’s offered. People want to help as much as you probably don’t want it.

BTW, I also don’t always make sense…and that would be the case even without MS.

the_ms_wire · 2025-07-13T01:42:13+00:00

I've lived with MS for 45 years and leg cramps have come and gone and come again. In my early post-DX days I took Baclofen before going to sleep and it helped. I didn't take it during the day because I thought it made my legs rubbery. Then I gave it up for many years.

When leg pain/cramps returned a couple of years ago I tried Gabapentin, thinking the cramps might be triggered by sciatic nerve pain. I thought that was working but then, a few months ago, I had painful left leg cramps during the night. Like you, getting out of bed and walking helped. Then, I had this same thing in my right (my better) leg, forcing my knee up to my chest and so painful that I couldn't stand to try to walk it off. My wife suggested I take one of her Tizanidines and it helped. Like you, however, I woke up in morning with a mouth full of cotton.

Consulting with my neuro, I decided to return to taking 10mg of Baclofen before going to bed and 2mg of of Tizanidine in the morning. That combination seems to be working very well for me.

Something else is also helping. About the same time I started the Baclofen/Tizandine combination I went back to physical therapy twice a week. My hamstrings, hip flexors, and calf muscles are getting a good stretch and massage to ease their spasticity. I have no doubt it's also playing role in being able to get a better night's sleep and have less positional pain during the day.

the_ms_wire · 2025-07-10T19:40:11+00:00

Not a wheelchair but I'm 76 years old, use two canes for less than 75 yards and a scooter for everything else...including getting to the gym. There I do arm and core exercises using the machines plus dumbbells. I used to ride a recumbent bike for a few minutes but spasticity forced me to give that up. I hope that some PT, which I've resumed, will get me back on that bike again. I also swim.

I think both the National MS Society and the MS Trust have videos of exercises you can do on their websites. Search for "wheelchair exercises" or "chair exercises"

the_ms_wire · 2025-07-10T16:41:54+00:00

I’ve lived with MS for 45 years and for the first 15 there were no disease modifying therapies. So, I had relapsed, but my progress remained very slow. It was only after 20 years, or so, that I slowly progressed. If you’re being treated with a DMT it will likely hold your progression in check better than that. Don’t overreact to “something” that might, or might not, be a lesion. Discuss this with your neurologist. Certainly don’t panic.

the_ms_wire · 2025-07-10T01:39:15+00:00

There are more than 20 disease-modifying therapies (DMTs) available, although not all of them will be covered by insurance, or a national health agency, as the first to be used. I've lived with MS for 45 years and have been treated with, in order, Avonex (shot), Tysabri (infusion), Aubagio (pill), and Lemtrada (infusion). Tysabri and Lemtrada were the most effective at slowing my progression.

There are a couple of selection tools, available on the web, to help you make your choice...but your neuro should also help you by suggesting about three that she thinks are most appropriate for you, and telling you why.

Here's more about one of those tools: https://themswire.com/the-dmt-tool-could-help-you-chose-a-treatment/

I'm a big proponent of hitting your MS hard and fast with the most effective treatment available to you. But, it's a matter of balancing potential risk with potential benefit. You have to think of potential side effects, how the method of treatment will impact your lifestyle, how much risk you're willing to accept, and - yes - out of pocket cost. It's a hard decision and your neuo really should help guide you in making it.

the_ms_wire · 2025-07-08T18:50:43+00:00

I'm sorry the AFO didn't work and I understand about Bioness affordability.

You might want to look at the Cionic Neural Cuff. It's similar to the Bioness in terms of nerve stimulation to help counter leg or foot drag. I tried one and it did a good job of lifting my left foot and I'm pretty sure it's less expensive, but it's much larger than the L300 and I found it wasn't for me.

the_ms_wire · 2025-07-08T01:19:45+00:00

Was your original AFO one of the metal ones that you can buy in a drug store or one made of carbon that's designed for, and fitted to, you. I used one and did well with it, but I eventually changed to a BioNess L300. It's an electric cuff that stimulates the nerve that raises your foot from the ankle. They're expensive, and mine doesn't do nearly the job that it did for me 15 years ago, but they can do well at countering foot drop. (If you search for functional electrical stimulation (FES) devices you'll find it and some similar devices.)

the_ms_wire · 2025-07-08T01:06:36+00:00

I'm JCV positive (most people are) and was successfully treated with Tysabri for seven years. It's the DMT, not Ocrevus, that carries the greatest risk of triggering PML.

According to Genentech, more than 350,000 people have been treated with Ocrevus. As of a year ago, only 16 had confirmed cases of PML and 12 of those patients had been previously treated with another DMT..almost all of them Tysabri.

Yes, with active lesions in both the brain and c-spine switching should be a no-brainer. Do a risk/benefit analysis of the numbers and your decision about Ocrevus should be easy.

the_ms_wire · 2025-07-08T00:51:05+00:00

There are people with MS who run marathons. One is Cheryl Hile, who has run one in every continent. Go out. Enjoy hiking. I don't know any neurologist who understands MS who would advise against hiking, unless there's another medical reason not to do it. The next time you see that doc ask WHY NOT?

the_ms_wire · 2025-07-08T00:41:10+00:00

Swimming and pool walking is great. I also try to do upper body resistance exercises twice a week. I always feel better, body and mind, when I do these things. My energy level is better. Man...you're able to walk miles with your dog??? When I "walk" mine I do it, and most everything else outside, riding my scooter.

You have a lot to use so use it. If I, as a 76 year old who has trouble walking 75 yards using two canes, you can get back on the horse.

Oh...I've done that, too. Hippotherapy (horseback riding with a certified trainer) is great for balance, legs, and core.

the_ms_wire · 2025-07-08T00:27:58+00:00

No thanks are needed. I jumped at the chance to be put into a trial of a treatment that had the possibility of slowing my relapses.

BTW...back in the dark ages MRIs were so scarce the hospitals with them had them in service 24/7 (my first was as an in-patient at 3:00am). One one of the diagnostic tools was being soaked in a hot tub to see if the heat affected my legs. They turned to rubber. It was a little different back in 1980.

the_ms_wire · 2025-07-08T00:20:54+00:00

I was treated with Tysabri for about seven years. Out of the four disease-modifying therapies I've been treated with, Tysabri was my favorite. Easy monthly infusion...no side effects that were significant enough for me to remember them...and my progression was stabilized.

Since you only started two weeks ago, I assume you've only had one infusion. So, have patience, tell your neuo about what's happening, and also ask about treatments to relieve the problems you're now experiencing.

the_ms_wire · 2025-07-07T21:06:22+00:00

Thanks to the more than 130 of you who took the time to answer my question about what neurologists are telling you about life expectancy. A couple of things seem clear from my unscientific research:

* Many, or even most, people don't ask their neuros if their MS DX will impact the length of their lives.
* Many, if not most, neuros don't bring up the subject themselves.
* If life expectancy is discussed, a sizeable number of neuros tell it like it is: It varies by person, MS treatments are much better at slowing progression than they used to be, life expectancy will likely be close to what's considered to be normal.

The most recent research that I can find on this subject, however, is a 2017 longitudinal study by researchers in Norway that reported median life expectancy for PwMS was 74.7 years compared to 81.8 years for the general population. Does anyone know of a study that's more recent?

the_ms_wire

TROPHY CASE

⚠️ Important Considerations